About Me

I am a girl who fell in love, got married and wanted to have a regular ol' ordinary family. What I ended up getting was everything but.
This blog chronicles our journey as a family who was blessed with a very special child.
From the day we found out that she had only a 5% chance of living to the present, life has been a true roller coaster of emotions. And most surprisingly, more rewarding than I ever thought possible.
Click here to contact me.

The Harlie Fund

Due to the requests of many caring people, our family set up a legal trust fund, "THE HARLIE FUND" to help with Harlie's care. You may click here for more information or click on the donate button above.

The Harlie Crew

We invite each fan of Harlie to join the following initial crew members and commit to make a monthly contribution to The Harlie Fund.

With Christy's willingness to share, we have worried about, prayed for and rejoiced in the accomplishments of a remarkable girl. The members of The Harlie Crew together show their support by contributing monthly. If you would like to join us, please call Bill Jeffries at (804) 288-1672.

Wednesday, September 28, 2011

I have to give you just a little background info before I can tell you about last night's event.

First - A few years ago, Tom's company moved locations. During the process they had some leftover computers. Tom remembered that the Ronald McDonald House (RMH) in DC was in need of some computers. Since he couldn't get to DC, he called our local house and asked if they wanted them. They did, so he took them there. While there, the manager gave him a tour and mentioned that they were going to remodel the kitchen. Tom said he would be interested in helping them in any way possible.

A year and a half later, he got a call asking if he was still interested in the kitchen renovation. Of course he said yes. Tom was invited to bid on the project. But, it wasn't as simple as a bid sounds. It was a long process of interviews and meetings. There was a committee assigned to select a company for the job and that meant a lot of work, and time. After several months they narrowed it down to three companies. Then two, then one. And they selected Tom! I meant to blog about it weeks ago - but as you know - my blogging time has been scarce lately.

Since then, Tom's been at the RMH several times meeting his subs and going over measurements and plans, etc. So, last week, Tom came home and told me that the RMH was having a fundraiser the next week and would I like to go. I said sure. Then a few days later (Thursday) he calls me and tells me that we have been invited as guests - and they want me to SPEAK about what the RMH means to me.

Oh, and by the way, it's Monday night and they are expecting about 350 people. Gulp.

So, I went home and started working on what I would say. Amazingly, the words just flowed and it practically wrote itself.

I felt MUCH better once I knew what I was going to say.

So, on Sunday we had my family over to celebrate Harlie and Cooper's birthdays. While they were all here, I asked them if I could read my speech to them to practice.

I read the second sentence (keep in mind the first one was "Hi. My name is Christy".) and started crying. Oh, no. That's NOT a good sign!!!!

Everyone laughed (more in support, but also because it was pretty funny and pathetic) including me. That just made me even MORE nervous.

It's one thing to live your life - it's another to hear your life in spoken words. I remember the first time I said that Harlie had Goldenhar Syndrome out loud. It was hard.

Anyway, I practiced and tweaked it some. The impending doom of having to speak in front of so many people pretty much consumed me.

Finally Monday night arrived and by then, I just wanted to get it over with. Tom said that they told him that I would be speaking early in the evening, so at least I could get it done and then enjoy the night.

The event was at a local hotel. Once we got there (around 6:30) and found his contact, she told us that I would be speaking sometime between 8:46 and 9:00!!!! Ugh! The agony!!! So, we walked around and ate some food (they had a lot of chefs from local restaurants there so you could try their food). Luckily, it was open bar. So I had to have a drink. Or two.

Ronald McDonald "himself" was there, available for photographs. So, Tom and I went and had our picture taken with him. It was funny. I hope they actually send us the picture. And speaking of pictures, I am so mad I forgot my camera! Ugh.

Finally, it was time for the speakers.

It says "Tom and Christy" but it was really just me.

My heart was pounding I was SO nervous!!!

I had to go up on stage (with lights!), stand behind a podium and hold a microphone. Geez. It was scary! But, once I started speaking, I was fine. I really was! I made sure I didn't speak too fast. I didn't mispronounce anything. And I looked up and around the room as I spoke. I was really proud of myself!!!

Here's what I said:

Hi. My name is Christy.

I knew that the Ronald McDonald House helped families. I just didn’t know it would help mine.

To give you a little background, we live here in Richmond. I’m from here, and my husband is from Pittsburgh. Our experience with the Ronald McDonald House is in Washington, DC. Our daughter was born there, because we knew she needed specialized care that was not available here in Richmond.

Harlie turned five years old, yesterday. A huge milestone, considering during my pregnancy we were told that we had only a 5% chance of ever bringing her home.

She has a craniofacial syndrome called Goldenhar. Her abnormalities prevent her from being able to breathe through her mouth and nose, so she is trached. She’s hearing impaired, she signs and is now learning to talk. She is a happy, normal little girl with a lot of medical challenges.

In addition to her craniofacial abnormalities, she also has a series of complicated heart, lung and spinal defects. She’s had 20 surgeries so far (four of them open heart), and she’s had another 15 procedures under anesthesia. We don’t know how many more are in her future. But we do know that she will need a heart transplant at some point - to quote her surgeon - when her heart runs out of gas.

All in all, she has spent well over a year of her life in the hospital.

So, we’ve spent a lot of time in a Ronald McDonald House. It has certainly helped our family financially. Hotel rooms in Washington, DC aren’t cheap or conveniently located.

And food is a big issue. The only option for food at the children’s hospital in DC is their cafeteria. It’s expensive. And it gets pretty old after a while.

Because of the Ronald McDonald House we were able to have a healthy breakfast at the house, pack our lunches and snacks and take them to the hospital. And after a long, tiresome day, we could come home and have a home cooked meal for dinner. And most nights, cookies or brownies - my favorite.

But aside from all that goodness, the Ronald McDonald House did a lot more for me…

Harlie’s birth was not a joyous occasion, like it should have been. While we knew about her heart and lung defects, we had no idea she had Goldenhar Syndrome. When I was discharged from the hospital, I didn’t have to pack up any congratulatory flowers, or balloons. No one knew what to say, no one knew what to do.

Our social worker at the children’s hospital told us about the Ronald McDonald House and got us set up there. We left the hospital and went to Target. Normally, one of my favorite places in the world, just not that day. I remember thinking I should be at home in my pajamas holding my little baby. But, instead I was two hours away, standing in a Target.

And I had never felt so alone. And so scared.

We bought some necessities and headed to our home away from home, the Ronald McDonald House. I had never been there before. The manager showed us around, and explained how things worked. I saw other families there. I saw thank notes from happy families who had gone home. And I saw other new moms, who were just like me – confused, scared and in shock.

And then I realized I wasn’t alone. I wasn’t the only scared mom who had to go through something I didn’t want to go through.

And that brought an unbelievable amount of comfort to me. And hope. And at the time we needed both desperately.

The next morning I walked into that hospital a new woman. I had hope. I loved my daughter and was willing to do whatever I had to do to get her home – where she belonged.

Now, when we go to the Ronald McDonald House, we take our daughter with us. The first night we stay together, the three of us. She plays and explores and has fun. And then we get up early the next morning to head to the hospital for surgery. The Ronald McDonald House provides a routine. It provides comfort – but now not just for me and my husband, but for Harlie, too.

And for that, we are so, so grateful. Thank you.

They clapped and I left the stage and went and stood next to Tom. Immediately people started coming up to us, saying nice things. They said thank you for sharing your story. They asked how she was doing now. And they said that I didn't seem nervous at all up there. Crazy! Oh, and two people told me that I just made a lot more money for the RMH. haha!

I met two women who lost their sons to complications from congenital heart defects. One was 10 years old and the other was older than 6. He died while he was waiting for a new heart. It was a reminder that even though Harlie is doing great - there are never any guarantees. Since Harlie's birth, I've met/known so many moms who have lost their children because of heart defects. It is so sad. And scary. As one of the moms said, "they can't save them all." Truly heartbreaking.

Another person who came up to us was Ronald McDonald. And a restaurant owner came up to me and told me that he's had two children born prematurely and he thought he had been through it - until he heard our story. Then he gave me a hug. It was really great to receive such warmth and kindness from complete strangers.

I am so glad I had the opportunity to speak. I think it was a great experience. And it wasn't nearly as bad as I thought it would be.

Sitting here with tears--great work on your talk. It was so well-written and I'm sure touched everyone who had the chance to hear it. Give yourself a pat on the back... and get ready for more speaking engagements (bc I know they're going to hunt you down after hearing your first talk!! :)

Great job Christy!! Nathaniel's 1st grade teacher is a big advocate for community service and one of their projects for the year is to collect can tabs for the Ronald McDonald House. Nathaniel is very excited about it; we explained hoe the RMcDH gave us a place to stay when we were in DE for Abby - it just further helped to solidify his interest in helping.

Murphy

Murphy is 13 and is in eighth grade. He is constantly making us laugh with his crazy sense of humor and wonderful imagination. He is a great big brother and adjusted with no problems to this role. He has been an easy kid to raise from the get-go (despite the fact he entered this world 5 weeks ahead of schedule).

Harlie Caroline

Harlie is 10 and is in fourth grade. She has Goldenhar Syndrome, VACTERL Association and a lung defect that required the removal of 2 lobes on the right side. After over 50 surgeries (4 of them open heart), she is remarkably age appropriate. She is the sweetest, funniest little girl I've ever met. You can't help but fall in love with her.

Cooper

Cooper is 8 and is in third grade. He is a very talkative, high energy and affectionate little guy. He is all boy and he is a very funny kid. We are so lucky to have him!

Rooney

Rooney was born on February 5, 2012. He has been a wonderful addition to our family. He is such a great little dog and I just can't imagine life without him now! I love him so much!!!